Banca de DEFESA: HEYTOR DE QUEIROZ MARQUES

Uma banca de DEFESA de DOUTORADO foi cadastrada pelo programa.
STUDENT : HEYTOR DE QUEIROZ MARQUES
DATE: 16/12/2024
TIME: 13:30
LOCAL: Defesa virtual
TITLE:

“Everything that is rare is found in Paraiba”: the linkages and obstacles carried out by people living with rare diseases from a political perspective.

KEY WORDS:

Biosocial activism; public policies; genetic citizenship; rare diseases.

PAGES: 200
BIG AREA: Ciências Humanas
AREA: Antropologia
SUMMARY:

In my research, I realized that one of the main demands of the group of people living with rare diseases was the lack of public policies. In addition to this lack of assistance and the denial of basic rights, there has been an eminent concern about government policies since 2016, as a neoliberal idea has been implemented in the public sphere. The aim was to understand how the socio-political dynamics surrounding rare disease patients are constructed, taking into account public health policies for rare disease patients, biosocial activism and the formulation of genetic citizenship, all of which are guided by a government/parliamentarians and agents who produce policies. With 13 million people living with a rare disease in Brazil, there is a need to understand the dynamics of the composition and management of public and party policies. This has led anthropology and the social sciences to develop work that goes beyond the theoretical basis of illness and expands the possibilities of an analytical field. In this way, I followed two methodological paths (online and offline), due to the need to do research during the COVID-19 pandemic. In the first, I carried out virtual research, in which I identified new political agents who have some representativeness/relevance in the rare disease debate, building a map articulating the respective actions of these agents, following events, public hearings and parliamentary sessions that were available in the online model. The second methodological route involves an ethnographic in-person visit to the state of Paraiba, to find and interview political agents, associations, family members and health professionals. I understood that part of the group of people living with rare diseases associate themselves with the Bolsonaro discourse due to an idea of care represented by people like Michelle Bolsonaro. I understood that the fight for rights is mainly guided by associations that have a long way to go to advance their agendas and provide maximum dignity for people living with rare diseases. Another factor that stands out is how party politics constructs a complex system of symbols and meanings around rare disease patients in order to politically guide their stories and their work. The social world of rare diseases is complex, with all its ramifications, but it shows that “being rare” is actually a condition that goes beyond the biological and appropriates the social when its characteristics are activated. “We are all rare” when we need to gather around agendas that are advances for the public.

COMMITTEE MEMBERS:
Presidente - 1358748 - CARLOS GUILHERME OCTAVIANO DO VALLE
Interno - 1152605 - FRANCISCO CLEITON VIEIRA SILVA DO RÊGO
Interna - 1360691 - RITA DE CASSIA MARIA NEVES
Interna - 1691014 - ROZELI MARIA PORTO
Externa à Instituição - EDNALVA MACIEL NEVES - UFPB
Externa à Instituição - JOCIARA ALVES NOBREGA